I remember my oldest when he couldn’t talk. He finally started to talk when he was about 3 years old, after a lot of intense therapy done be various SLP’s, including a few working through Georgia State’s “Toddler’s Project.” It’s only been a few years since they stopped tracking him and his progress, but I’m sure he was one of their success stories, combining AAC with various behavioral techniques.
Now we have a hard time keeping him quiet. Back in the day, his meltdowns would be seriously long and loud crying jags that might even include him hitting himself. The a couple of years ago, there was a lot of self-negativity as he felt awful about himself. Some of it was actually amusing as he took responsibility for the sinking of the Titanic and the Cretaceous period extinction event. During each stage, we always wondered what was next. He’s almost 14 and has been going through full-blown puberty and teenage angst. It can be a frightful thing for even the parents of the most typical children. For those who have children with autism it is even ore perilous as so many things become magnified with adolescence. The academic and social expectations go through the roof during middle school.
Just lately I have noticed a new trend with his meltdowns, which happen most often when we as parents put demands on him or reprimand him for doing something he should not be doing. “OH! You’re just discriminating against me because I have autism!” or “You hate me because I have autism!” or “You need to learn more about autism so you don’t judge me!” He’s usually saying this while pulling at his own hair.
It’s kind of an astounding evolution in thinking and language. But I do have to hand it to him: he is learning how to advocate for himself. Back when he couldn’t talk, I would have never dreamed we would get to this place. Even though the tantrums are not pleasant and even though when he gets to this point he doesn’t listen to anything anyone says, it is still movement forward.
We’re fortunate that he knew how to read before he could talk. He always loved books and reading to him was actually something that was soothing and calming to him. So when he was in 1st grade or so, we got him a book about someone who had a friend named Sam. It kinda helped that he had someone close in the family named Sam. We got it so maybe his own classmates might be able to relate to him better and it wasn’t long before he was reading it himself. We never really tried to hide autism and what it was from him. I do know parents that do that, in the name of trying to protect the kids from labeling themselves. But kids do that anyway, even if they don’t know what exactly the label is. Different. Weird. Dork. Nerd. Outcast. Freak. Geek. Retard. Whatever you want to call it, kids will label themselves and each other. I know parents who quit going on the annual autism walks because the kids were starting to ask questions about autism and why they were walking.
The latest book his mother got for him is Ellen Sabin’s Autism Acceptance Book. He’s had that for a few years but now it seems to be sinking in that he is different. The fact that he is using the label to kind of try to guilt us as parents seems to indicate that he is beginning to differentiate himself. This is not a bad thing, even though it seems like he lashes out with it at the worst times. He’s establishing an identity and autism is part of it. It is part of who he is, and he isn’t trying to dodge this fact of his life. In fact, he is kind of embracing it. He can tell you that talking to yourself can be part of autism. Being sensitive to sound can be part of autism. He is getting to a point where he can articulate what is going on with him and is becoming more okay with it. He’s not there yet. EVERY teenager struggles with doubt and insecurity and finding a place to belong. He’s trying to discover his own autonomy and identity and is gradually getting a handle on things. Gradually.
I think the best way to help a child who has the ability to grasp the idea, is to be honest with them in all things. And to accept them for being the individuals that they are. We can all dream of there being some sort of cure, but that dream doesn’t help my son today. It doesn’t help him with his schoolwork, his desire to fit in or to develop his own dreams for the future. And by the time there is a cure, would he even want it? He’s incorporating this into who he is and it looks to me like he is staking his claim on his own little piece of the universe. It just happens to include autism. I tried to search for “Autism Power” and all I saw were images, slogans and sights dedicated to “recovery”. Unlike “Deaf Power” which returns all sorts of sites dedicated to the belief that deafness is only a disability because hearing people make it that way. There’s a few images referring to Autism as a superpower, but I’m not sure I like that message either.
This (among other reasons) is why I love the good folks on the Thinking Person’s Guide to Autism blog. Autistics are beginning to take up their own cause for advocacy and are actually offering a lot of hope for people like my son. The dialog is less on the horrible-ness of the disease and how hopeless it is, toward a more positive message of acceptance and that things ARE doable. I see this as one of the major civil rights shifts of our day. And if the numbers (1 in 88 births) are any indication, then we can expect a lot more voices demanding their right to exist. Expect to see “Autistic and Proud” on a shirt or button near you.